MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Scooby123's picture
Replies 0

Hi everyone, i completed ippi end of july had a scan straight away to see if it was working. it had reduced my cancer by 50%. i have had another set of scans but still awaiting results after 2 weeks. i go next week to get them. i have been in a lot of pain on my left side round my ribs and lower back left side. some days it is worse than others.  am wanting to know if it still could be ippi working or tumours growing. my tumour in one of my lungs went down to 0.8mm could it grow and cause pain in a short period of time or could it be treatment still working. i know people who have been on ippi not showed responding till later on finishing it. i know i got results from it straight away but can it stop working so quick. Any experience with this treatment and after completing it would be much appriciated. I have lung liver who knows eleswhere involment.



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Patina's picture
Replies 1
Last reply 11/26/2015 - 8:39am
Replies by: Scooby123

Hi Everyone,

As many of you know, my Mom was diagnosed with Stage IV melanoma in  November of 2013.  And 2 years ago today we found out that the radiologist completely missed 3 brain mets.  Even with this and everything that's happen she has had a terrific outlook due to how quickly she responded to the treatments AND all the terrific doctors at USC in Los Angeles.  

We were there again yesterday and after her 4th infusion of Keytruda and the new CT scans and MRI of her brain we are thrilled that things are stable or still shrinking AND there is nothing new.  



She was misdiagnosed for almost a month after getting the news that she was Stage IV. After seeing 3 melanoma specialists she was also diagnosed with brain mets too. She had gamma knife radiation for 8 or 9 tumors (1 was missed) December 9, 2013 and started Yervoy 4 days later.  

Her body "loved" Yervoy as far as the cancer went, but she got colitis pretty bad and only had 3 infusions. She did end up having 17 more brain mets found in April of 2014 and we switched the treating neuro-oncologist and radiation oncologist who had been treating her. (They were sub-par as far as I am concerned and we were lucky my Mom did not have any permanent or detrimental problems due to thier treatment or advice.)  

My Mom had just over a year of very good scans and ended up with a reoccurrence and needed a craniotomy in June of this year and another round of gamma knife radiation for 1 new brain met in August.  

She started Keytruda in late August of this year and the tumors in her trunk are still getting smaller or are stable. All about the size now of a grain of rice.  We are hoping that the Keytruda can boost her immune system enough so that she does not have any further issues with brain mets.


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Millykamp's picture
Replies 2
Last reply 11/26/2015 - 9:55am
Replies by: jamieth29, tschmith

I just wanted to wish those who celebrate Thanksgiving an very Happy Thanksgiving!!!!


For ose in other country I hope this find your day well and full of happiness and joy!!!!!


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Replies by: Bearsworth, kylez, AshleyS

I got my first infusion 2 Friday's ago and started having a small fever (99) this past weekend. I now have a rash over my entire body that itches like crazy. I am able to curb the itching with Sarna and Benadryl spray. I was also having some mild diarrhea that I am able to control fairly well with Imodium.  Seems as though within 5-10 minutes after whatever I eat I get a cramping stomach. I'm curious if people that have had side effects if they were similar and how long did it last?

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Bubbles's picture
Replies 1
Last reply 11/26/2015 - 10:00am
Replies by: jamieth29

One more way Opdivo has been approved for use in melanoma as first line for V600 wild type, nonresectable or metastatic melanoma....announced today:

Great love and appreciation to the ratties!!!  All my best to all of you.  Celeste

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BethA in VA's picture
Replies 1
Last reply 11/24/2015 - 9:57pm
Replies by: Anonymous

Help.  My first post was blocked as spam.  I'm not spamming anyone.  This is real.  Diagnosed in 1992.  Then again in 2004.  Use to be here alot.  Now 11 years later, have lesion on stomach about size of quarter.  It was water filled, now has scab and fibers in the center that are yellow and look like material.  I pulled them out with tweezers.  There was no end to it. 

Does anyone else have experience with a fiber area in a tumor? 

Melanoma tends to cut into your looks!!


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Anonymous's picture
Replies 0

We haven't heard from Ginger888 for a long time. I hope she is doing well.

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Anonymous's picture
Replies 2
Last reply 11/24/2015 - 8:38pm

I have failed Keytruda and the docs are now offering me Ipi/Nivo combo.

I am a little bit scared to do this combo as i had pretty bad GI issues with Keytruda.

Has anyone had success with the combo after failing Keytruda?

I am not sure if i have any other options anyway!




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jsagraves's picture
Replies 7
Last reply 11/25/2015 - 8:06am

I'm not really sure if I'm stage 3a, 3b or 3c.  Based on the results I received today, I would assume 3a.

So I went through full node removal in my neck and underarm on my right side.  The surgery took place Friday, November 13 and I received biopsy results today.  They removed a total of 59 nodes from those areas and every one came back negative for cancer, which I'm very thankful for.

I'm very numb from the top of my ear down to the top part of my rib cage and trying to gain strength and range of motion back in my arm and turning my head.  Other than the numbness and drainage (I have a drain tube), no significant side effects from the surgery.  I'm assuming the numbness will dissipate over the months ahead.

We are still trying to determine whether or not to pursue further treatment, although I think I've ruled out interferon.  I may try to find a clinical or observe from here on out.  We'll see.  Anyway very thankful for the good news today and while it could be said that the node removal was unnecessary (in hindsight), you just make the best decision possible with the information you have and don't look back.

Any thoughts on clinicals versus observation is appreciated.  I'd like to focus on treatments that build my body and immune system, not break it down further.

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Anonymous's picture
Replies 19
Last reply 11/24/2015 - 11:37am

Let's get some positive stories for the newly diagnosed.

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Anonymous's picture
Replies 2
Last reply 11/22/2015 - 6:13pm

This is my first scan since diagnosed with micromets in one node. What can I expect? I've heard people say my pet light up like a Christmas tree. Does that mean I can see the screen during the test.

After the test do they just tell you your done and you can go or do they explain anything they find or see?

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Cynlee's picture
Replies 1
Last reply 11/22/2015 - 3:26am
Replies by: stars


 I had a shaved biopsy done almost 5 weeks ago on the top of my foot . Came back invasive melanoma Clark level II and .35 mm. Both vertical and Radical growth phase.  I was just told the results on Monday night. 

I have a surgical oncologist appointment on Tuesday. There is now a very large  bruise on my foot growing form/around the spot. Plus I think I see the beginning of two more spots almost forming a triangle with the original spot at the top of triangle. The bruise pretty much engulfs one of the new spots and almost to the second one.  They look just like what the first one did as it came up on my foot in the past 10 months. 

Does anyone know what this bruise is? And can I be getting two more spots? 

Thanks for any answers. 

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sgrain's picture
Replies 7
Last reply 11/21/2015 - 8:47pm

I've been coming to this board since 1998 when I was first diagnosed stage 3.  As one poster below said, I haven't been on the board much because I've been busy living my life but I try to post when something significant (good or bad) happens.  This time it's something good.  I hope it gives many of you hope and insight to how these immunotherapies work.  Here's a brief history of my journey:

In 2012, MM was found in my right lung which was surgically removed.  In 2013, MM came back in both lungs.  I then tried the following drugs:  Ipilimumab (didn't work), Zelboraf (worked a little, another right lung tumor disappeared but then left lung tumors grew), Dabrafenib and Mekinist (didn't work), Keytruda - worked but with complications.

I was on Keytruda for 9 months.  While I was on it, my first 2 PET scans (3 months apart) were getting worse and a lot of metabolic activity but my oncologist said to be patient so I stayed on it.  At 9 months, I had GI problems which turned out to be 2 bacterial infections so I had a CT scan and stopped the Keytruda.  A month or so later, I had another CT scan which showed decreased turmor burden in the lung.  I then had a PET scan and got the same results, the largest tumor was almost non-existent and very little metabolic activity in another small tumor.  2 months later, PET scan showed No Evidence of Disease (although my Dr. said No Evidence of "Active" Disease).

Both Mayo and my Oncologist say it is likely that the first 2 PET were actually due to internal inflamation and not tumor growth.  When I got the infection and stopped treatment, things cleared up and we could actually see the tumors disappear.  I never thought I would see this day, being NED, but have hope for all of us dealing with this terrible disease.  Good luck everyone!

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Sce1's picture
Replies 10
Last reply 11/24/2015 - 11:49am

My 6 year old son has a mole on his back that has changed in the last two months. He has Ben Sen by a dermatologist in the UK. The dermatologist was not a paediatric specialist. At the start of the appointment she told us that she thought it was fine and she would make an appointment for 12 months. Then changed her mind and he is now seeing a paediatric dermatologist in 3 months. I'm really worried. The mole is small but has a light pink area spreading around it. I'm not sure if I should get a second opinion or wait for the appointment in three months? Your thoughts would be very much appreciated. 



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